This post was sponsored by Celgene Corporation. Personal opinions and thoughts are my own.

When I was diagnosed with breast cancer, one of my biggest concerns was for my kids—I wanted them to understand what was going on and be comfortable asking questions and interacting with me. They were 5- and 8-years-old at the time, and they were both smart and intuitive kiddos. I knew that I would want to be very frank and honest with them, but I didn’t want to scare them, either. That’s a pretty fine line. Someone once gave me a book written for kids whose mom was diagnosed with breast cancer. I read through it hoping that it might be something that would help explain things in an age-appropriate way to my kiddos. The scientist in me wanted an age-appropriate but scientifically accurate explanation, and the book I’d been given was pretty far off base. The conversation went well, as well as it could, I suppose, but I was a little caught off guard when the first words out of my little guy’s mouth were, “Are you going to die?”

Which is why I want to talk about a new, free app from Celgene called The Magic Tree. Just after arriving home from a support group meeting with other breast cancer moms with little kids where we’d been talking about just this issue, I got an email about a new, free app Celgene developed to help families facing that discussion. They created The Magic Tree app (download it at magictreebreastcancer.com or from the App Store or Google Play Store) for kids who are 5- to-8-years-old.

App Overview

The Magic Tree app has four different sections, and each features a short animated video and a game. As kids watch videos or play the games, they earn different stickers that decorate their tree. If you’re a left-to-right, rule-following left-brain like me, you might be inclined to start at the first icon of a house, but fight the urge and go to the playground first.

At the end of each video, they’ll tell you which section to head to next, and the videos make the most sense if you go in order.

The videos were well done, age appropriate, and (to my delight) scientifically sound. I would definitely suggest that you still watch them first to make sure that you’re comfortable with the amount of information they give and are ready for questions after you’ve watched them together with your kids. They are careful to tell kids that not all people with cancer die, which would have been a helpful message when I was talking with my son. They even encourage kids that sometimes grown-ups are better at talking about things like cancer when kids ask the questions. The longest video is the one that discusses how doctors treat breast cancer, and it does a pretty good job of talking about the treatments and their side effects. I was amused when they used a spaceship vaporizing bad cells to represent the immune system, explaining that cancer cells trick the immune system and can hide and grow without being killed. I was also particularly fond of the knight who represented chemotherapy, slashing through a few good cells in his efforts to slay all the cancer cells.

They explained that chemo will kill some other fast-growing cells in addition to the cancer, and that would cause side effects, like hair loss. The narrator assures kids that hair loss is very common (not something to cause fear) and subsequently showed the mom in the video bald or with a scarf on her head. Of course, there were also discussions about surgery and radiation, and they talked about how a mom might feel after her treatments. They were all short, simple, and ended by encouraging the child to speak to his mom with any questions.

Interactive games

Each section also has a game. In three of the sections, the game is just for fun—not a lot of skill required and no relationship to cancer. Which is pretty on point with one of the messages of the videos—you still get to be a kid and have fun even if mom is sick. The game in the first “Friends and Relatives” section, though, was pretty relevant. Kids are at a picnic, and they are told to hug the people there by tapping them. They have to be careful, though, not to hug anyone who is sick, and so must avoid tapping people who are coughing or have a red nose. This reinforces the message that it’s important to help keep mom healthy, so kids are encouraged to avoid people who are sick. Quite a few of the people appearing for a hug are bald or scarf-clad mom figures, and kids will quickly learn that it’s ok to hug mom.

Resources

The last section of the app can be accessed by clicking the menu icon at the top right. In that section, there is a glossary that the kids are encouraged to use when they see a word they don’t understand. They can tap the word and it will be read aloud along with a kid-friendly definition. It includes some words that aren’t used in the videos, but that parents might use when talking about cancer. I think probably my favorite section of the app is the discussion guide for parents. Be sure to read through this section before you watch any videos with your kids. Even if you decide not to have your kids watch the videos or play with the app, this is a great resource for parents. It has questions kids might ask as well as some thoughtful considerations about how a parent might answer. Finally, the resource section offers some suggestions of where to go if you need more information or support.

Overall Thoughts

The app is colorful and interactive, and while my kids were too old to ask for real impressions, I think most younger kids would happily watch a 2-3-minute animated video and play the games over and over again. Older elementary kids might not play the games as much once they had them figured out, but they would likely draw comfort from being able to re-watch the videos since knowing what to expect often eases anxiety. I love the fact that the app was developed with input from patients who are part of Cancer Support Community—having stakeholder involvement early on means that the final outcome is much more relevant. I would be remiss not to point out that while men can get breast cancer, this app is designed with a mom as the cancer patient. However, the glossary did point out that, while it is rare, men can get breast cancer too. And though I spoke about it a little differently with my own kids, I appreciated that one video addressed the fact that metastasis is when breast cancer spreads to other parts of the body, something that is often overlooked in children’s books. It’s hard to believe it’s been more than five years since that October afternoon when I was diagnosed. And in the years since, I’ve chatted with lots of moms with littles who are trying to figure out how to talk to their kids about their own diagnosis. One thing that I quickly learned is that no two kids are the same, no two families are the same, and so every family’s choice of what and how much they share will be a little different.

As I said, I quickly learned that the way I talked to my kids about cancer might not be right for every family. Parents know their kids best, and they need to make their own decisions about how to share things. But The Magic Tree app is an excellent resource for parents, and it could be a great starting point for discussions for many families facing a mom’s diagnosis with breast cancer.

I’ve said it here before. I love when I struggle to write a piece, and in doing so, I learn something about myself. I’ve been writing and re-writing this post for days. Last week was my five year “cancerversary,” and I felt like I should write some sort of celebratory post for the occasion. While it’s not true for most breast cancer patients whose breast cancer can still come back ten, fifteen, even twenty years later, once a triple negative patient gets to five years past diagnosis with no mets, the risk for recurrence is negligible. (The “silver lining” of a super aggressive tumor is that it can’t lie in wait too long. If it’s coming back, it’s usually fast and hard.) Translation: I probably won’t die from breast cancer. Seems celebration-worthy, no? And yet, there is no celebration in my heart. A fellow triple negative friend brought me a lovely orchid and a card last week. “…it means so much, yet nothing at the same time.” She got it completely.

After writing several different versions of the post and hating every single one, and I think I finally figured out why I can’t celebrate. It’s survivor’s guilt. Why am I the one who gets to live while others die? I never obsessed over dying, I really never gave it much thought. I think making it this far, I’m coming to terms with the fact that I probably won’t die from breast cancer. Still sounds like something to celebrate, not to “come to terms with.” But my heart has broken over and over again watching friends die of the disease we share. It’s so hard be happy for myself as I grieve for my friends, knowing that 113 women and men will die of metastatic breast cancer in this country every single day.

So, there’s no big five year party for me. I’m healthy and things look good. But maybe let’s not make a big deal out of it. It’s hard to celebrate, knowing how many won’t get that chance.

When I headed to google yesterday afternoon and started typing, I was a little surprised at how quickly google figured out what I wanted to know.

Yep, of course google knew, and it turns out that’s because lots of other people turn to google in desperation after hearing the same words I’d just heard from the CEO of Cure Forward. I was curious how many startups fail, and from just a glance at the first page of results, the number looks to be between 80-95%.

So, we’re in good company. The bummer thing is, I thought Cure Forward really was a good company before it was forced to make the hard decision to cease operations. I knew startups are a risky business, and since I remember thinking that I really hoped this one would be successful, I suppose I knew that this was a possibility. I really do believe, with time, it could have been profitable, but sadly not in time to meet goals. There is such a gap between patients desperate for trials, doctors who are desperate to help their patients, and trial sponsors who are desperate for participants. The need is there, and I thought Cure Forward could stand in the gap to effectively meet the needs of all the stakeholders.

Now, of course, I’m disappointed that my last paycheck will be coming in a few days, though I know there are those who had more substantial roles with the company who are left searching for a job because they need one. And it is devastating for all of us with an emotional investment in our desire to see this model work. But really, my heart is shattered for all the patients who were in the process of looking for a trial and found hope in the clinical trial navigators of Cure Forward, patients who are now left on their own with a heartfelt “I’m sorry.”

What makes this so hard is that I really believe this crew could have been a powerhouse in getting patients to the right trials. I know that the people at the top have really good hearts– Martin, Alicia, and Frank really wanted to help patients. Sure, they each had jobs to do as they built the company, but their intent was to improve outcomes for cancer patients, and they weren’t willing to compromise that for a single cent. What makes them so unique to me, though, was how they were willing to really engage and empower patients. Our little crew of Precision Medicine Advocates was not only compensated (many assume an advocate is willing to do tons of work for no money because of their emotional attachment, and frankly, take advantage of the situation) but we were actually encouraged to represent the company. Our content was prominently featured on the website, our opinions sought, and our contributions made up the bulk of the company’s social media presence. I went to policy and scientific meetings and even set up a meeting with my local cancer center as a Cure Forward Advocate. I genuinely believed Cure Forward would make a difference for patients, and I felt like my contributions would be able to help make that happen. Of all the projects where I’ve been involved, the PMA Team at Cure Forward is among the few where I felt not only welcome, but sought after. I felt like I brought value to the team. Being part of the PMA team has allowed me to meet a few new advocates and get to know others better. We are not only resources for each other, but we are friends. We are committed to continue to write and tweet and engage, and to figure out creative ways to fund our little band of advocates. I’m sad that Cure Forward will be shutting its doors and closing down the site. Sure, even really successful people fail a lot of times before they succeed, so we’re in good company. It’s just that I already was in a good company, and I’m sad to see it end.

Perhaps it will just have to be the beginning of something else. #AlwaysForward

Four years ago, Sally and I set out for a fun photo shoot day to document my barely-there hair. It was soft and blond, and while it definitely still looked like a decision that was made for me, I actually really liked it super short. So it seemed that four years later was a good time to check in. At one point, I figured out that it would take 4.9 years for my hair to completely grow back to its pre-chemo length, and it turns out that math was pretty good. So for a little walk down memory lane:

There were definitely struggles, especially when I was a week or two away from a haircut. But really, I liked a lot of the styles as it grew. I put this collage together for a new friend who is starting to grow out her hair after chemo and had asked about products. I realized that since we’ve only known each other around 6 months, she never saw my short hair. And as I put it together, it struck me how much I really loved the 6-9 months stage (pictures 3 and 4).

So I’ve been thinking about that hair for a while now. I even had a dream that I showed up and demanded that Dragan cut it all off! And while I fantasize about that a lot lately, I can’t seem to take the plunge. It’s taken so long to get to this point!

I was having a hard time figuring out exactly why I can’t cut it. I really did love the way it looked short, and I loved the powerful feeling short hair gave me. But it took so long (four years!) to get to this point, and there were lots of maintenance haircuts and more than a few rough patches. And while it was quicker to get out the door, no ponytail could change my look or save a bad hair day.

But I realized something funny last week. I was in Illinois, seeing friends and family I hadn’t seen in years. In situations like that, people want to ask if you’re still healthy, but they have a hard time knowing how to do it. I choose to just make it easy and at the first suggestion, I will say something about feeling great and having good reports at my latest checkup. Now, to emphasize how long it’s been, I have caught myself mentioning that my hair is long again and I’m feeling great. And so this weekend I realized it. My long hair is a milestone. The further the end of each strand of hair is from my scalp, the further I am from cancer. Now when I tell people that I had cancer, they can quickly know that it was a while ago, because otherwise, I wouldn’t have such long hair, right?

My hair desperately needs to be cut. As a matter of fact, I think my last haircut was just before that curly shot in November. The ends are starting to split and it’s just getting that unhealthy look to it. I had been putting it off, and about the same time I realized why I’m holding onto the long, high maintenance hair (which I do love, too, by the way), I realized why I haven’t scheduled that appointment. I can’t decide whether to ask for a trim or to go back in time three and half years.

I had the pleasure of presenting to the Georgetown Breast Cancer Program on behalf of the Georgetown Breast Cancer Advocates a couple of weeks ago at their annual retreat. In my brief talk, I hoped to encourage them to engage patient advocates as part of their research team. I was sure to point out that as advocates, we try to represent more positions than just our own.

Anytime I have a forum to speak “on behalf of the patient voice,” I try to be sure to incorporate more voices than just mine. I don’t like the idea of a few elite patients doing all the talking when researchers, clinicians, and pharma decide to engage patients. And so, when I’m planning a talk, I try to ask for input.

Next week I will be part of a session at the Society of Toxicology shedding some light on the many toxicities that patients face as they undergo cancer treatment, and those that continue for years, or follow them for their entire life. But I need some help! Do you have any burning questions or things that you think need to be considered more than they are? What would you like researchers to address going forward? Please feel free to comment here, on Facebook, or email me– I really do want to be sure I address YOUR concerns!

So I know I’ve been pretty quiet here lately. Between my two jobs, a few new volunteer positions (cancer, church, and mom related), and normal shuttling of children to all the places, I’ve been pretty slammed. But I have been writing a few things lately, anytime you’re interested, you can find my latest post on my contributor page on Cure Forward. So far, five of my pieces have been published, and they focus on the ideas of precision medicine and clinical trials. If you’re interested in a cheat sheet– here they are:

This morning Facebook told me that I had memories for the day, and I love looking back at old pictures of my sweet kiddos, so of course I clicked over to reminisce. Among all the fun fall pictures I’ve posted on this day through the years, I was surprised to see a photo of the Washington Monument captioned with “This morning’s run.” I very rarely run downtown, so it took me a minute to remember why I’d done a special run that day. I screwed up my brow and looked at the date. And then it hit me. I’d forgotten a very important day, one that I never thought I’d forget.

My cancerversary. Four years ago, on October 5, my surgeon told me that I had breast cancer.That was definitely one of those days whose date really sticks with you. And yet, only four years later, I might have forgotten it completely without Facebook.

So this left me with some weird feelings. I mean, I hadn’t forgotten my best friend’s birthday. But I was disappointed in myself that I let such monumental day pass so unceremoniously. It’s not really a day to celebrate, it’s more like my own personal Memorial Day– a day to remember. In the past I’ve always gone for a good run or spent the day with friends. I was disappointed in myself, but then I decided I should congratulate myself– I may not be at the point where I can’t remember the date, but I should count it as progress that the date wasn’t looming over my head like a dark cloud.

I sometimes worry that I’ll never have a “cancer-free day” where I don’t think about cancer at all– it’s my job to think about cancer. But maybe when I’m really busy and have a lot of life going on around me, or maybe when enough time has passed, maybe it will be possible for me to have a day when I don’t think about my cancer at all.